Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: A mixed-methods study with patients' perspectives

Bethan Jones; Sarah Bennett; Ingrid Larsson; Heidi Zangi; Carina Boström; Kristien Van Der Elst; Françoise Fayet; Mie Fusama; María Del Carmen Herrero Manso; Juliana Rachel Hoeper; Marja Leena Kukkurainen; Suet Kei Kwok; Elsa Frãzao-Mateus; Patricia Minnock; Tiziana Nava; Milena Pavic Nikolic; Jette Primdahl; Roopa Rawat; Mareen Schoenfelder; Matylda Sierakowska; Marieke Voshaar; Edgar Wammervold; Astrid Van Tubergen; Mwidimi Ndosi

doi:10.1136/rmdopen-2022-002256

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: A mixed-methods study with patients' perspectives

Bethan Jones, Sarah Bennett, Ingrid Larsson, Heidi Zangi, Carina Boström, Kristien Van Der Elst, Françoise Fayet, Mie Fusama, María Del Carmen Herrero Manso, Juliana Rachel Hoeper, Marja Leena Kukkurainen, Suet Kei Kwok, Elsa Frãzao-Mateus, Patricia Minnock, Tiziana Nava, Milena Pavic Nikolic, Jette Primdahl, Roopa Rawat, Mareen Schoenfelder, Matylda SierakowskaMarieke Voshaar, Edgar Wammervold, Astrid Van Tubergen, Mwidimi Ndosi

Department of Psychology

Research output: Contribution to journal › Article › peer-review

9 Citations (SciVal)

Abstract

Objectives To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. Results The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. Conclusion The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

Original language	English
Article number	e002256
Journal	RMD Open
Volume	8
Issue number	1
Early online date	22 Apr 2022
DOIs	https://doi.org/10.1136/rmdopen-2022-002256
Publication status	Published - 22 Apr 2022

Bibliographical note

Publisher Copyright:
© Author(s) (or their employer(s)) 2022.

Data Availability Statement

Data sharing not applicable as no datasets generated and/or analysed for this study. Data are available upon reasonable request. Data sharing not applicable. This is a mixed methods study and therefore the data generated are not suitable for sharing beyond that contained within the report. Further information can be obtained from the corresponding author.

Acknowledgements

The study team acknowledge the support of patients and
healthcare professionals in conducting this work, including those who translated
the surveys and responses and those who disseminated the survey but their
involvement did not qualify for authorship. These include: Ingrid Cederlund and
Beryl Svanberg, (Patient Research Partners) Sweden; Connie Ziegler and Lena
Andersen (Patient Research Partners) Denmark; Mariela Geneva-Popova, Associate
Professor, Bulgaria; Ailsa Bosworth, National Rheumatoid Arthritis Association,
UK; Dr Michaela Stoffer-Marx, (Country PI), Austria; Marie Claude Ruf (Patient
Research Partner, Association Nationale contre l’Arthrite Rhumatoïde ANDAR),
France; Dr Ricardo Ferreira (Country PI), Portugal; An De Groef (Patient Research
Partner), Belgium; Victoria Romero Pazos (Patient Research Partner), Spain; Silvia García Díaz and Jenny de la Torre Aboki (Spain); Véronique Urbin (Physiotherapist,
Saint-Antoine Hospital, France); Valérie Hudry and Sylvie Darthout (Nurses, SaintAntoine Hospital, France); Sophie Naud (Saint-Antoine Hospital, France); Michèle Dumontier and Florence Besse (Patient Research Partners, Saint-Antoine Hospital, France); Sirkku Hamunen, Paula Heiskanen and Taina Pemberton (Patient Research Partners), Finland; and the Finnish Society for Rheumatology for disseminating the survey

Funding

This work was funded by European Alliance of Associations for Rheumatology (EULAR, Grant ref: HPR040).

Keywords

arthritis
health services research
patient care team
qualitative research
rehabilitation

ASJC Scopus subject areas

Rheumatology
Immunology and Allergy
Immunology

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Cite this

Jones, B., Bennett, S., Larsson, I., Zangi, H., Boström, C., Van Der Elst, K., Fayet, F., Fusama, M., Herrero Manso, M. D. C., Hoeper, J. R., Kukkurainen, M. L., Kwok, S. K., Frãzao-Mateus, E., Minnock, P., Nava, T., Pavic Nikolic, M., Primdahl, J., Rawat, R., Schoenfelder, M., ... Ndosi, M. (2022). Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: A mixed-methods study with patients' perspectives. RMD Open, 8(1), Article e002256. https://doi.org/10.1136/rmdopen-2022-002256

Jones, B, Bennett, S, Larsson, I, Zangi, H, Boström, C, Van Der Elst, K, Fayet, F, Fusama, M, Herrero Manso, MDC, Hoeper, JR, Kukkurainen, ML, Kwok, SK, Frãzao-Mateus, E, Minnock, P, Nava, T, Pavic Nikolic, M, Primdahl, J, Rawat, R, Schoenfelder, M, Sierakowska, M, Voshaar, M, Wammervold, E, Van Tubergen, A & Ndosi, M 2022, 'Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: A mixed-methods study with patients' perspectives', RMD Open, vol. 8, no. 1, e002256. https://doi.org/10.1136/rmdopen-2022-002256

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abstract = "Objectives To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. Results The sample comprised 2779 participants (79\% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. Conclusion The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.",

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AU - Bennett, Sarah

AU - Larsson, Ingrid

AU - Zangi, Heidi

AU - Boström, Carina

AU - Van Der Elst, Kristien

AU - Fayet, Françoise

AU - Fusama, Mie

AU - Herrero Manso, María Del Carmen

AU - Hoeper, Juliana Rachel

AU - Kukkurainen, Marja Leena

AU - Kwok, Suet Kei

AU - Frãzao-Mateus, Elsa

AU - Minnock, Patricia

AU - Nava, Tiziana

AU - Pavic Nikolic, Milena

AU - Primdahl, Jette

AU - Rawat, Roopa

AU - Schoenfelder, Mareen

AU - Sierakowska, Matylda

AU - Voshaar, Marieke

AU - Wammervold, Edgar

AU - Van Tubergen, Astrid

AU - Ndosi, Mwidimi

PY - 2022/4/22

Y1 - 2022/4/22

N2 - Objectives To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. Results The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. Conclusion The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

AB - Objectives To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. Results The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. Conclusion The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

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KW - health services research

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Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: A mixed-methods study with patients' perspectives

Abstract

Bibliographical note

Data Availability Statement

Acknowledgements

Funding

Keywords

ASJC Scopus subject areas

Access to Document

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